Last updated on: 30/04/2020
1. Contact details
Name of data sourceEuropean Society for Blood and Marrow Transplantation
Name under which the data source should be displayed in the inventory (e.g short name if one exists)EBMT
Name of organisation
1) Department/research group
2) Organisation/affiliationEur. Society for Blood and Marrow Transplantation
Administrative Contact
Title Mr
Last name McGrath
First name Eoin
Address line 1EBMT Exec. Office
Address line 2Edifici Dr. Frederic Duran i JordÃ
Address line 3Passeig Taulat, 116
CityBarcelona
Postcode08005
CountrySpain
Scientific Contact
Title Dr
Last name Harry
First name Dolstra
Address line 1Radboud university medical center
Address line 2Department of Laboratory Medicine
Address line 3P.O. box 9101
CityNijmegen
Postcode6500 HB
CountryNetherlands
2. Description/category
Disease/case registry
3.1 Coverage of licensed medicinal products
Licensed Medicinal Product
Comments
Registry used to support PAS purposes for Chimeric Antigen Receptor (CAR)-T cell therapy in specified diseases
3.2 ATC code (5th level)
No
3.3 Other product dictionaries
ICD10 partially
3.4 Recording of indication for use
Yes
Is a coding dictionary being used?
No
4. Coverage of events
Event
Dictionary
Dictionary details
Adverse events (for pharmacovigilance databases)
No
Symptoms/signs
No
Diagnosis in primary care
No
Specialist diagnosis
No
Discharge diagnosis
No
Laboratory values
No
Death
No
Specific event
Description: The EBMT registry collects information on adverse events of special interest that are defined on standardised data collection forms. Information typically includes onset date, depending on the event additional information on severity, pathogen for infectious related complications, treatment for the complication and date of resolution is collected.
No
Blood and Bone Marrow diseases
5. Year of establishment
1974
6. Geographical origin of data
EEA/EFTA countries
European Union
Non EEA/EFTA areas
Non EEA Europe (excluding Russia & former Soviet Republics)
Russia & former Soviet Republics
Middle East
Asia
North America
South America
Africa
Australia & Oceania
7. Demographical extent of data collection
Nation-wide
8. Age groups
17 years and under [Paediatrics]
18 to 45 years
46 to 64 years
65 years and over
9. Size of the source/catchment population
10 a. Total (cumulative) number of persons with actual data
666,000
10 b. Number of persons with active data collection in past calendar year
40,653
11. Possibility to obtain additional information on the patient
a) Clinical information from treating physician?
Yes
b) Questionnaire data from the patient?
No
c) Genetic information or samples?
No
12. Possibility of links to other sources of data
No
13. Written policy governing data access
Yes
14. Committee to evaluate requests for data access
Yes
15. Charge/fee for data access
Yes
Special arrangements for academic purposes:
No
16. Selected publications of the last 5 calendar years using data from this data source
ReferenceLink to web-publication
Unmanipulated haploidentical versus HLA-matched sibling allogeneic hematopoietic stem cell transplantation in relapsed/refractory acute myeloid leukemia: a retrospective study on behalf of the ALWP of the EBMT.https://www.ncbi.nlm.nih.gov/pubmed/30718798
